Note from Alice

Navigating the Challenges of the Holiday Season

NFCA President & CEO

Celiac disease uniquely requires patients to manage their own treatment. So, we have no option but to get good at managing our disease ourselves. We become expert label readers, waiter interrogators, inspectors, professional-level party wet blankets, all in the name of taking care of our health. When we aren’t taken seriously and our needs are not understood, there’s real potential to drag us down into anger, depression, and just throwing in the towel.

The holiday season brings these challenges to the forefront. Festive parties, family gatherings, workplace celebrations, school events – all are food-centric, and it’s a bit of a minefield to navigate the offerings. For self-protection, we can end up doing all the cooking just so that we know what went into the food and beverages. We have become very resilient. We are the poster children of an invisible illness, aiding and abetting in our own invisibility by coping so well. Many of us don’t even know how accustomed we’ve become to making do, taking 100% responsibility for managing our illness. Because of the fad status of the gluten-free diet, at times we feel a little beaten down and ridiculed because our treatment is a target of comedians, Twitter trolls and even TV commercials.

But, the joy of the season is too strong of a pull to wallow. We never should have to sacrifice holiday joy and experiences because we live with a serious genetic autoimmune disease. I have been diagnosed with celiac disease for over 20 years, so I have decades of experience to offer when it comes to the holiday season. I hope these tips help you move through your celebrations in good spirits!

Gluten-free baking has become much easier. Years ago, a friend took the time and energy to make me not one, but three gluten-free cakes for Christmas! We weren’t sure how any of them would turn out, hence the added assurance of two extra cakes. As it turned out, all three cakes were lousy! Despite our disappointment in the outcome, I felt so loved, understood and taken care of by my friend. We laugh a lot about that baking adventure. And, part of the reason we can laugh is that we don’t have to go through that anymore. There are a number of gluten-free flour blends in mainstream stores – no more do we have to order foods from other countries. There even are gluten-free cake mixes on the shelves next to the conventional mixes. Follow the directions and the cake will come out as expected. If you are baking in a kitchen that also has regular flour and gluten products, make sure your utensils, bowls, pans and countertops are meticulously clear of items that could result in cross-contact. And, do your gluten-free baking first to avoid the possibility of airborne flour from other gluten-filled baking you may be doing.

See if you can make an entire gluten-free holiday meal that no one will notice is gluten-free. Make it a game. See if you can stump the guests. Maybe tell them after dinner, maybe not. With some label reading, menu-planning and careful sourcing of ingredients, it is completely possible to make an entire meal that satisfies the whole family without it being self-consciously gluten-free. I know because I’ve done it!

If you are newly diagnosed with a gluten-related disorder, you’ll no doubt feel sad about foods you can no longer have. Announce to the family that it’s time to introduce a new “favorite dish” to the traditional meal. If you aren’t the primary food-preparer in your household, talk to and work with the person who is to see what might work. If you can no longer have the special family recipe of monkey bread, maybe you can figure out a similar gluten-free recipe and give it a new name – pull-apart cinnamon roll nuggets, anyone? Have fun with the new creation while honoring the old favorites.

Never forget: when in doubt, go without. I know that it’s hard to explain to your family that you just can’t eat a dish, no matter how much you want to, but avoiding a risky scenario means that you won’t get sick and you’ll be able to enjoy the rest of the celebration uninterrupted by symptoms of a gluten-ing.

As Thanksgiving nears, recognize that you are one of the lucky ones who actually knows that you have to avoid gluten. 83% of people with celiac disease are undiagnosed or misdiagnosed. They are going through their holidays as usual, maybe feeling terrible, and definitely leaving themselves vulnerable to long-term consequences of undiagnosed celiac disease. The short-term disappointment of missing out on the traditional stuffing will be far outweighed by the opportunity to live longer, better, and celebrating more holidays as a result. Now that is something to rejoice about.

Cooking with Oonagh

This recipe is the basic British Victoria Sandwich (American gold cake) recipe that I make gluten-free. I've made it with several different flour blends – mine, Pamela's Baking Mix, Pamela's Artisan and King Arthur Gluten-Free Flour. So, it should work with many gluten-free flour blends. The only thing to be aware of is that stronger flours like Pamela's Artisan and the brown rice flour blend of King Arthur often needs a bit of milk added or it can be dry.

This was devoured at a girls’ night in, with wheat eaters coming back for seconds. Make it with gluten-free ginger snaps or other cookies in a spring form pan or 9" pie plate finished with cream, caramel sauce, and caramelized nuts for a no bake Thanksgiving treat.

About Chef Oonagh Williams

Gluten-free Chef Oonagh Williams has a Culinary Arts degree and always cooked real food even, before a family diagnosis of celiac disease. You can find Chef Oonagh Williams at Gluten Free Cooking with Oonagh on Facebook. She will be speaking at the 7th Biennial Gluten Free Education Conference in Fargo, North Dakota in November. Contact her for advice on food for a gluten or allergen-free life. Get her 'Delicious Gluten Free Cooking' ebook, just in time for the holidays, with gluten-free popovers, English Trifle, Tiramisu and more.

Research Opportunity for Kids, Teens & Parents

Researchers need to develop the right tools to best understand what it’s like for children and adolescents to live with celiac disease and learn about the symptoms they experience. Researchers also need to understand the experiences of younger kids as reported by their parents.

NFCA is working with AbbVie and ICON Clinical Research to get children who have been diagnosed by a doctor with celiac disease involved in a study that could lead to the development of such tools. Kids and teens must be between 8 and 17 years old to be considered for participation.

This research study includes a one-time, 60 minute, in-person interview with kids and teens diagnosed with celiac disease. For children between 8 and 10 years old, a parent must also participate.

What are FODMAPs and What’s the Connection to Celiac Disease and Gluten Sensitivity?

FODMAPs and the low-FODMAP diet are fairly new to the gluten-free world. To get some insight into FODMAPs and how the low-FODMAP diet could help people with gluten-related disorders, we talked to Amy Jones, MS, RD, LD, chief clinical dietitian for Mary Rutan Hospital.

Question 1

Q. What does FODMAPs stand for?

A. The term FODMAPs is an acronym for: Fermentable, Oligosaccharides, Disaccharides, Monosaccharides And Polyols.

FODMAPs are short chain carbohydrates that may be poorly absorbed in the small intestine. This can cause more water to be pulled into the colon and can also rapidly ferment, or be broken down, by bacteria in the bowel. This can cause symptoms like increased gas, bloating, constipation/diarrhea and pain. These symptoms are part of the diagnosis of Irritable Bowel Syndrome (IBS) and also overlap with celiac disease symptoms

Develop and implement new approaches to communication through feedback on educational materials and social media campaigns

Increase participation in NFCA’s programs

Now, we are ready for another successful year and are looking for new members to join the Council. We are also excited to announce a slight name change to the Council: Patient and Family Advisory Council, which better reflects the membership and scope of NFCA’s community.

We will be accepting applications through Monday, November 30, 2015. If you are interested in joining, you will need to complete both steps of the application process:

Allergic Living Sneak Peek: Thriving with Celiac: Eamon Murphy’s Journey to Great Disease Control

By Lisa Fitterman

At six feet, four inches, a powerful 230-pound forward on his high school basketball team and a star student on the cusp of college, Eamon Murphy is a far cry from the little boy Allergic Living first wrote about back in 2010.

“Sometimes, I look at photos of me from when I was small and I think, ‘That was me? I think of how far I’ve come, how much I’ve grown up,” says the easygoing 18-year-old from Chappaqua, New York.

When we first met Eamon and his mom, Lisa Murphy, she related how her son had started out as an elfin toddler with a tendency to slide into disturbing trances, and whose bones seemed to break like twigs.

Thank You for Your Support of NFCA’s Grant Challenge!

By NFCA Director of Development Kimberly Yost Moyer

NFCA had quite the rally at the end of our fiscal year, which ended on October 31, 2015. We were so lucky to have two anonymous donors step forward with the offer of challenging the community to match their gifts. Our first challenge grant for $10,000 came to us in September and the donor offered not only to match each gift dollar for dollar but for every new donor that made a gift, they would match that gift two dollars for each dollar donated!

The support from you, our community, was immediate and impressive. Once we reached the $10,000 goal, a new donor stepped forward at the end of October to push NFCA across the finish line with a $15,000 challenge grant. They too were generous enough to agree to the same terms as our original donor and matched new donors two to one.

Thank you to all of our donors that helped NFCA close our fund year with the strongest online support we have ever received and for being a part of an effort to not leave one penny on the table! Thank you to our very generous donors that believe in NFCA and the work we do each day. It is only together that we can elicit change and move toward a future without celiac disease.

Holiday Scenarios

It is no secret that the holiday season tends to cause some anxiety within the celiac disease community. When the focus is on food, how can you not feel a little apprehensive about the festivities?

From talking with our community regularly, we know what often happens during the holiday season. So, we took these common scenarios and asked our blogger friends and NFCA staff members to offer their advice on how to handle different situations.

New Infographic: Baking Without Gluten

If you’re new to gluten-free baking, there’s no time like the present to learn! We asked top bakers and NFCA Blogger Ambassadors to share their tips for baking without gluten. Check out their tips in this infographic:

Holiday Gift Ideas that Support the Cause

Are you starting to think about your holiday shopping? What if you could buy a great gift and support NFCA’s free programs and services? You can!

Bravelets

Bravelets are bracelets that support various causes and encourage people affected to “be brave.” There’s a different style for to suit everyone’s taste. When you make a Bravelets purchase, $10 is donated to NFCA. Check out all the Bravelet designs here.

Gluten-Free Sampler Kit from GlutenAway

NFCA Blogger Ambassador Taylor Miller of GlutenAway recently launched a program where readers can purchase kits full of gluten-free products. This way, you can stock up on snacks and figure out which ones are your favorite without the risk of buying an entire box of something you don’t like.

GlutenAway now has an NFCA Sampler Box, full of delicious gluten-free snacks. $5 of each NFCA Sampler Box is donated in support of our programs. See what’s in the kits at GlutenAway.com.

Amazon Smile

Do you shop on Amazon? If you do, consider switching over to Amazon Smile. You’ll be able to browse everything that is normally listed on Amazon, with the added bonus of having a portion of your purchase donated to your charity of choice. The best part? It doesn’t add a cent to your final bill. Be sure to select National Foundation for Celiac Awareness (NFCA) when you get to www.Smile.Amazon.com.

Beckee Moreland, Director of the GREAT Kitchens training program of NFCA trained 80 foodservice professionals from a wide range of facilities in West Monroe, LA on June 29, 2015 at the West Monroe Convention Center, a GREAT Kitchens accredited location, with the support of sponsors Rich Products, Vantage Health Plan, and Affinity Physicians Group.

NFCA chose West Monroe because it is in a gluten-free “desert” – it’s in a part of the country in which gluten-free education and awareness is weak or non-existent – and because there is a strong local support from Vantage Health Plan, led by CEO Dr. P. Gary Jones, who himself suffered from undiagnosed celiac disease for many years. With enthusiasm from our friends in Monroe and the sponsorship of Vantage Health, Affinity Physicians Group and Rich Products, foodservice workers from K-12 schools, a daycare center, 8 different hospitals, and 10 different restaurants learned how to safely accommodate their gluten-free patrons. GREAT Kitchens and GREAT Schools, Colleges and Camps training was offered free of charge to all attendees.

“It was wonderful to make such a big impact in just one day. Many attendees started with very little knowledge about the need for safe gluten-free food handling, and the training really raised awareness. We’ve opened the door and know that knowledge can evolve into practical application,” noted Beckee. “Vantage Health and their team of registered dietitians really led the charge in Monroe. With their support and that of Affinity Physicians Group and Rich’s Products, we made gluten-free foodservice education more accessible and gluten-related disorders more manageable in that region.”

Coming Attractions

Central PA Gluten-Free Expo
November 8, 2015

Don't miss the third annual Central PA Gluten-Free Expo! Come out to visit with gluten-free vendors, get free samples, win door prizes, enjoy a gluten-free lunch or dinner at Legends Pub in the Penn Stater and more! There's even a Kids Activity Zone, complete with allergen-free play dough and face painting. National Foundation for Celiac Awareness (NFCA) President and CEO Alice Bast will talk about the need for celiac disease to be taken seriously, along with NFCA's nationwide family screening campaign, Seriously, Celiac Disease.

General admission tickets are $7 in advance and VIP admission tickets are $20 in advance.

It takes time to learn how to successfully navigate a healthy, gluten-free lifestyle. Melinda Dennis, a registered dietitian with 15 years of experience in nutritional counseling, is here to help people with celiac disease or gluten sensitivity by providing them with in-depth knowledge about the gluten-free diet. She is hosting an upcoming weekend-long workshop that will include gluten-free gourmet food, personal Q&A time, cooking demos, product recommendations, and carefully selected gluten-free samples. There will also be optional yoga, hiking, and professional massages offered.

The information found on this website is not intended to be a replacement or substitute for professional medical treatment or for professional medical advice relative to a specific medical condition. We urge you to always seek the advice of your physician. There is no replacement for personal medical treatment and advice from your personal physician.

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